Tag Archives: Energy

Research into PR finally!

I have just returned from Chapel Allerton Hospital in Leeds where I was able to sit in on a presentation to the Patient and Public Involvement group about Palindromic Rheumatism and the research there into PR (funded by Arthritis Research UK) and also early arthritis.

There were three presentations in total, two specifically on PR. I think I need a little time to digest it all as there was a LOT of information given in a very short space of time (half an hour for each presentation). However, I thought I’d blog now about some of my initial impressions.

Firstly, it’s great to know that there is finally some research specifically into Palindromic Rheumatism. As anyone who has read my blog for a while will know, there is precious little research into PR itself. So, I was really pleased to hear Prof Emery say that PR was particularly interesting to study, NOT just for getting a better understanding of PR, but also for possibly improving our understanding of rheumatoid arthritis too – after all, some of us with PR will go on to develop RA. But not all.

Another thing he said –though not in his presentation – is something that I think is pretty important, but not something I have considered before. We were talking afterwards, and he said that there was something going RIGHT about my auto immune response in that it was able to switch itself OFF. I hadn’t thought about it in that way before. I mean, yes, I’ve often felt grateful that in ten years, I’ve got no obvious joint damage and have not apparently progressed to RA (though this does not mean I won’t in the future), but I’ve always thought about my inflammation and flares as something going wrong in my immune system, rather than thinking about the fact that I have days and sometimes weeks of no inflammation and pain as something going RIGHT! As Prof Emery said – there is something going right in that the inflammatory response switches itself off and I go back to ‘normal’, whereas for someone with RA, the switch is almost permanently set to ON (as I understand it)….

It leads me to think that it’s probably equally important to look at what’s going RIGHT with people with PR as well as what’s going WRONG in order to understand it better and possibly help prevent progression to RA – and maybe even prevent flare ups altogether? I had truly never thought of it like this before.

The second presentation was about the results of research into people who had a diagnosis of PR. The numbers were small – only 58, but the results were still interesting. Of the 58 people, 48% did not (during the time of the study) progress to RA, and 52% of them did. One of the most interesting thing about the findings was that there seemed to be three things that seemed to make it more likely for someone to develop RA (any one of them increases the risk of developing RA, but if someone has all three, that will increase the risks even more).

  • Smoking. I find this particularly interesting. I had never known about a link between RA and smoking, and I can’t give up something I don’t currently do but it could be useful information to PR patients who do smoke as an extra incentive to give up.
  • The intervals between flare ups were smaller in those who progressed than those who did not. Sadly (for me), the intervals between my flare ups can be really short – though they seem to be getting longer since I’ve been following my new regime.
  • Anti-CCP (ti-cyclic citrullinated peptide antibody) – was a big indicator and seemed to be very significant. I can’t remember the figures here, but high levels of Anti-CCP seemed to indicate that people were more likely to progress to RA than those who did not have any or had lower levels.

As Prof Emery said – if we can understand better who is more likely to develop RA, then we can intervene early with treatment in order to perhaps prevent RA developing and joint damage happening in those people.

As soon as I got home, I went to look at my last lot of blood tests to see what mine showed. I couldn’t see whether or not they had tested for Anti-CCP, but on the letter to my GP after my appointment, it said under diagnosis that my CCP antibodies were negative, so they must have tested me for it at some point. I’m not sure how recently that was.

All the presentations were very interesting, but it is a passing comment that Prof Emery made that also piqued my interest from a personal perspective. Just towards the end of the session, one woman in the audience told us how starting to exercise – first by doing swimming and then tai chi – had made a huge difference to her life. Prof Emery responded to this by saying that the immunology of exercise was very interesting and that exercise could make a difference to your immune system, and that further research was needed, but that he believed that it could be an important therapy for RA, possibly improving the immune response.

It made me remember my own experience earlier this year at the bootcamp – how six days of intensive exercise did not exacerbate any pain or flares, but actually made my flare disappear altogether (after a six month almost permanent flare). And it also reinforces my belief that my regular yoga practice and exercise regime (almost daily cycling, plus zumba classes twice a week, sporadic pilates classes and daily home yoga practice) is probably as crucial to my current and future health as any drugs I might be taking.

So, what conclusions can I draw from what I heard today? Well, I’m definitely incredibly happy to know that at least someone finds PR interesting enough to study. However, it’s not likely to make an immediate impact on me or other PR sufferers.

I truly do believe, however, that taking care of my health holistically could be the key (in my case) to managing my symptoms and helping my immune response right itself. In me, this means following my current diet regime, doing lots of stress management (yoga, meditation, exercise), continuing to exercise (not just for the happy and stress-busting impact, but also for the immune system too, as well as helping keep me mobile, supple and build up strength), and managing my energy – resting BEFORE I need to and not overdoing it. Since I have been stricter about this holistic approach to my health, I have had more energy (I am even able to work a full 7 hour day, which would have been unheard of this time last year), fewer severe flares, and more pain-free days. Long may it continue.

Thanks for reading and thanks to the Leeds Musculoskeletal Biomedical Research Unit for having me along today. I apologise if there are any inaccuracies in the blog – I was writing as quickly as I could during the presentations, and so it’s highly possibly that I misunderstood or misinterpreted something!

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November News

It’s been a while since I last wrote, and happily, the summer flares that plagued me throughout July and August have subsided, and I’ve had a pretty calm Autumn.

Just after I wrote my last post, I saw a rheumatologist who ordered a whole raft of blood tests – five vials full! I got the results through my GP surgery, but they couldn’t make head nor tail of them as they hadn’t ordered them (!). My vitamin D levels seem pretty low – which given I take supplements AND I had been outdoors a lot in the summer, seems worrying to me. Neither the GP nor the rheumatologist thought it was worth taking any action on. Other levels are mostly normal, except for one marker that the rheumatologist said was consistent with inflammatory arthritis. Clearly, if he isn’t worried, then I shouldn’t be.

The main thing that came out of that appointment was a diagnosis of something new. Fibromyalgia. It was quite upsetting at first – getting a label of another chronic condition on top of the one I already have. Particularly as Fibromyalgia appears to be little understood and some medical professionals don’t even believe in it. But as my mum said, I’m already living with the symptoms, so getting the diagnosis shouldn’t really make much difference, particularly as there aren’t really any decent treatment options that seem to be appropriate for me.

The diagnosis has helped in some ways. It explains why my neck and back can be incredibly painful, despite the amount of physio I’ve had, and regular pilates and yoga that I do. It also explains why, when I don’t do any exercise, I feel like I have fewer spoons (and less energy) than when I do. My funny symptoms – the ones like my skin feeling sunburned or super sensitive, could also be down to fibro. So it’s good to finally get an explanation for that.

Since my last blog, I’ve had gluten twice. Both were small amounts and on both occasions, I was convinced that it would be fine, and it was too little to make a difference. After the first time, I had a three day flare that was pretty bad and painful – more so than anything I’d had for a long while. The day after the second occasion, I felt totally out of spoons and full of brain fog.

Coincidence or caused by the gluten? It’s difficult to know, but both incidences are enough to persuade me that it’s worth staying off gluten. I do feel as if I have more energy without it and I’m still eating healthier.

Since September, I’ve also been doing a daily morning yoga practice (just 15 minutes if I’m short of time, 30 if I’m not) on top of my meditation. The yoga is helping with general stiffness and pain, and is good for my energy levels too. It’s the first thing I do when I wake up, and it’s a great way to start the day. I’ve got a bunch of asanas that I like, but before I felt confident in self-practice, I used some online videos, including some from a website called Do Yoga With Me and the  30-day yoga challenge by Erin Motz

As far as my diet goes, I’ve got even stricter with what I eat and don’t eat. So, as well as totally avoiding gluten, I’m mostly avoiding dairy (mainly having goat’s or sheep’s dairy if I’m going to have any), still largely avoiding refined sugar, – (refined anything actually), avoiding additives and processed food and making as much food from scratch as I can. I don’t eat meat – but that’s not a new thing.

I’ve mainly been following recipes from Honestly Healthy  which recommends an ‘alkaline’ diet (which I guess is what I’m following). I have two Honestly Healthy cookbooks, which are great. I’ve also got a few nice recipes from Deliciously Ella.  Both are good sources of vegetarian, dairy free, gluten and sugar free recipes.

I also went back on a detox retreat, run by Olive in Spain. It was the second time I’d been and was as wonderful as the first time, which I reviewed for Queen of Retreats. I came back bouncing with energy (as I had done the time before).

The retreat reinforced the path I’m currently taking, and so I want to be as disciplined as possible, as far as I can. Hence the ‘mostly’ and the ‘largely’ when it comes to dairy and sugar. It goes without saying that I’m not drinking a lot of alcohol, and I’ve even cut down on coffee. So far, I’m pretty positive. I still get flares but they seem to be shorter lived, and I’m still having long periods of no pain (two weeks and counting currently).  My energy remains pretty good overall too.

The biggest challenge to the whole diet thing remains (as it was in August), eating out. That, and occasions where everyone brings in cake that I can’t eat.  This means that I imagine that the upcoming festive season is going to pose the biggest challenge yet. But I plan on making lots of lovely GF/Vegan/sugar free treats so that I don’t feel too left out.

If you want to know more about the types of food I’m cooking and eating, you can follow me on Instagram where I’ll post occasional photos.

Thanks for reading. : )

Some of the delicious meals served at Olive Retreat

Some of the delicious meals served at Olive Retreat

desserts at Olive Retreat - all sugar, gluten and dairy free.

Desserts at Olive Retreat: Sugar, gluten, dairy free.

Tired of being tired

Again, another two weeks have passed since I last wrote.  Flare-ups have been few and far between – mild or short-lived.  However, my energy levels have varied from having bags of energy to feeling as if I have none at all.

Most days, I’ve found that I have the energy for SOMETHING, which is good, because I’ve had a lot of work on. However, by about 4 or 5, I’m often absolutely spent and, on some days, even having a conversation feels like a complicated thing to do! My eyes, meanwhile, feel so tired that keeping them open feels like a supreme effort.

One of my current projects is to lead a course for women on building their self-esteem and improve their job application (and interview) skills. It’s quite a cycle there (40 minutes each way), plus then I have to lead a two-hour workshop. It’s great work – very rewarding – but I am usually pretty stressed about it beforehand, put a lot into it during the course and then crash as soon as I get home. So, just two hours of paid work, takes an entire day worth of energy. Having expected that, I don’t tend to make plans for those afternoons. Still, it’s a drag.

I’m also getting really BORED of feeling this way. I accept it as part-and-parcel of how I choose to live my life. But I’m bored of it. I’m tired of being tired. I don’t want to end up giving up everything in order to conserve energy. What would be the point of that? At least this way I still have a life and still do things that I enjoy or that are rewarding (even if they are stressful too). Yet, I’m tired of answering “tired” whenever anyone asks how I am. And tired of my internal dialogue going “I’m so tired”.

This particular run of tiredness (it’s not quite as bad as fatigue and a total lack of spoons – at least I have SOME), coincided with me stopping taking my St John’s Wort supplements (which I was taking for depression). I’d felt so much happier that I thought perhaps it was time to stop. But, just in case the two are linked, I’ve decided to start taking them again to see if the energy picks up a bit. So, along with the hydroxy, the doxy, the calcium & D supplements and the glucosamine, the St John’s Wort is back on the morning menu again as from this week.

I’d be interested in hearing what other people have found improves their energy or fatigue.